bellgirl Posted June 11, 2012 Report Share Posted June 11, 2012 I played ping pong with my husband yesterday, and had so much fun!! Then we danced a very short dance, and he stopped me from careening into the car parked beside us in the garage. Just a short bout of vertigo, but then it was over . I've come a long way in only a years time. My vitamin D, CoQ10, B complex, L-carnitine, and alpha lipoic acid have helped immensely, and all my meds, of course, and exercise have helped, too. I have much more energy!! Just wanted to post something positive Joy, Kim Quote Link to comment Share on other sites More sharing options...
LMG Posted June 11, 2012 Report Share Posted June 11, 2012 KIm- that's great! What do you think helped the most? Meds or supplements or time or what? Great to read about your improvement. We have a ping pong table in the garage and I miss playing. Sounds like I can hope to get back to that one day!!!How do you think the L Carnitine helps?Best wishes. Quote Link to comment Share on other sites More sharing options...
jpjd59 Posted June 11, 2012 Report Share Posted June 11, 2012 Kim:That's great news! So nice to hear someone is improving. It gives everyone else hope. Quote Link to comment Share on other sites More sharing options...
songcanary Posted June 12, 2012 Report Share Posted June 12, 2012 Ah, things are looking up. I am so happy for you!!Marsha Quote Link to comment Share on other sites More sharing options...
corina Posted June 12, 2012 Report Share Posted June 12, 2012 The little things in life that mean so much to us and make us so happy. Thanks for sharing Kim! Quote Link to comment Share on other sites More sharing options...
bellgirl Posted June 12, 2012 Author Report Share Posted June 12, 2012 KIm- that's great! What do you think helped the most? Meds or supplements or time or what?Great to read about your improvement. We have a ping pong table in the garage and I miss playing. Sounds like I can hope to get back to that one day!!!How do you think the L Carnitine helps?Best wishes.I started doing a lot of research on supplements, and I believe that a combination of all of these things together, supplements, medication, diet and exercise is what it took to get better. I took a hard look at all my symptoms, so you need to do this individually, too, and by trial and error, this became my regimen. I take L-carnitine about twice a week; it is an amino acid that is a transporter of fatty acids into the mitochondria of the cell, it helps with fat metabolism by improving muscle and bone mass ( I have the propensity to develop osteoporosis, being menapausal, my stature, and it runs in my family), it helps with lung function (I am asthmatic), kidney function, ( I'm on an angiotension antagonist for B/P) and heart conditions (helps with heart pain which I have, along with Mitral Valve Prolapse), and it also has an antioxidant effect to fight free radicals, which is great for the immune system!! I also don't eat a lot of red meat, which is where you also can find this, too, so I decided I needed it to help me to use my fat wisely. I also take vitamin C, and Magnesium, too, that I forgot to mention, and drink boost, and take whey protein on occasion, too, when my husband makes smoothies. I was also very deficient in D3, which I found out through blood work, so after mega dosing for about a month, it made quite a difference in my energy level. I'm now back to a maintenance of 2,000 I U's of D3. I would suggest to also get vitamin B12 checked regularly, as well, since a good many of us have found to be deficient in this, as well. Not me, but others... Quote Link to comment Share on other sites More sharing options...
yogini Posted June 14, 2012 Report Share Posted June 14, 2012 I actually think this is on topic. I thought you were going to say you played video ping pong, but fabulous that you played the real thing! Funny, because all of a sudden I have had this strange craving to take tennis lessons. You have inspired me to give it a try. Congrats on your progress! Quote Link to comment Share on other sites More sharing options...
bellgirl Posted June 14, 2012 Author Report Share Posted June 14, 2012 Go for it, Yogini What have you got to loose? Just be careful...don't "hug" the ground, please!! Keep those arms and legs strong. I do the elliptical, but I am holding on...don't think I could do "real" tennis yet. Table tennis is a start, though Quote Link to comment Share on other sites More sharing options...
yogini Posted June 18, 2012 Report Share Posted June 18, 2012 Funny, I can't do the elliptical, only the recumbent bike. we are all so different, I have a feeling I can play (gentle) tennis because it is easier than the elliptical. I am not thinking anything strenuous, just hitting some balls back and forth. Quote Link to comment Share on other sites More sharing options...
LMG Posted June 20, 2012 Report Share Posted June 20, 2012 Awesome Yogini....so great that you are contemplating tennis. Congrats!Got a question for you all.....does POTS kind of recede? I am in the first year which is severe but not as bad as the beginning months. In reading your posts, it seems like you all have been diligent and are now more physically active than previously. I know not everyone...but it is good to read about ping pong and tennis and I guess it sounds like some of you have found some fun again!! Quote Link to comment Share on other sites More sharing options...
bellgirl Posted June 21, 2012 Author Report Share Posted June 21, 2012 It's almost been a year since my diagnosis and being on meds for me, after 13 years of plummeting health with no diagnosis, so I'm finally improving energy wise. I was deficient in D3, too, so taking care of that problem has made a world of difference for me. My symptoms mimic MS, and it is typical for patients with this to have a deficiency in D3 and B12, so I requested the blood work, and sure enough, I found another issue to help resolve. I'm a fighter, and I don't give up easily. It's a good way to be, when you have this disorder, because it can get the best of you, if you let it Quote Link to comment Share on other sites More sharing options...
LMG Posted June 22, 2012 Report Share Posted June 22, 2012 My vitamin d level is 20. i guess that is low and I need to figure out what kind of supplements to take. Two yrs ago I took the prescription and it was ok. Now I have tried OTC and feel quite sick from them. Trying to figure that one out...and then hope to play some ping pong too.Glad you figured out some things that help, Kim. And hope you keep building on that improvement.Best, Lauren Quote Link to comment Share on other sites More sharing options...
bellgirl Posted June 22, 2012 Author Report Share Posted June 22, 2012 That is a low D level according to articles I have read, and my doctor. You should consult your doctor, because I was put on 4,000 I U's for a month with a level of 25, and now I'm on a maintenance of 2,000 I U, and I'm telling you, it has really made a difference, Lauren!! Joy, Kim Quote Link to comment Share on other sites More sharing options...
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